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Dementia: Preparing for the Future
Karl Steinberg, M.D., C.M.D.
Alzheimer’s Disease
Chronic, Progressive Memory Loss Associated with Behavioral/Personality Problems Trouble w/Language, Reasoning, Doing Things Usual Course around 10 Years, but Varies Large & Growing Public Health Issue ($100B/yr) Very Difficult for Families May Coexist with Other Types of Dementia Diagnosis can usually be made Clinically
Should Have Some Labs & Brain Imaging Done to Rule Out Other (Treatable) Conditions
Can Often Be Managed by a Primary Doctor No Cure, but Medication Can Help
About Me
Harvard, Ohio State, UCSD (Family Medicine) In North County full-time since 1992 Mission ParkSharp Mission ParkScripps Mobile Physicians, Kindred Village Square, Life
Care Center of Vista, Hospice by the Sea Long-Term Care Geriatrics Hospice & Palliative Care Medical Ethics Expert Consultation Lots of Boards, Committees, etc. Volunteer Faculty at UCSD and Camp Pendleton Love My Work!
About Me
Take Dog(s) to Work Every Day
Memory/Alzheimer’s Facts
Everybody Has Some Memory Problems Age-Associated Memory Impairment, Not a Pre-
Dementia Condition
Mild Cognitive Impairment—May Predict Future Alzheimer’s Dementia
Mental Exercise Can Help Prevent Progression
Incidence of Alzheimer’s Increases with Age
Usually Affects Short Term Memory First, then Long-Term Memory
Stages of Alzheimer’s Pre-Clinical, then Mild Cognitive Impairment, then:
EARLY: Still May Go Several Years before Diagnosis Examples of Forgetfulness:
Leaving Tasks Half Finished
Having Trouble Following Plot of a TV Show
Asking the Same Question Several Times
Withdrawing from Some Activities (Depression??)
Getting Lost While Driving
Forgetting to Take Medication
Missing Appointments
Irritability, Reduced Conversation (Depression??)
Usually Aware that There’s a Problem
Usually No Severe Behavioral Issues
Stages of Alzheimer’s EARLY: CAREGIVER STRATEGIES
Make Lists or Encourage Loved One to Make Lists
Encourage Appropriate Level of (Active) Mental Exercise
They Need to Stop Driving (Very Hard)
Get Regular Physician Follow-Up—Address Other Medical Issues (Blood Pressure, Depression, Pain from Arthritis, Sleep Apnea, Diabetes, etc.)
Don’t Constantly Quiz Them: Give Time to Respond to ???’s
Talk to Others—Including Others in the Same Boat
Share the Duties Optimize Vision/Hearing
Look Into Community Options
Accentuate the Positive !!
Get Affairs In Order !!! ***
Advance Care Planning Various Tools Available—make use of them!
Five Wishes, My Way Cards, GoWish Cards, etc.
California Advance Health Care Directive Durable Power of Attorney for Health Care
Usually just 2 basic choices: “Choice to Prolong Life” and “Choice Not to Prolong Life”—but there are many nuances.
Form is vague and open to a lot of interpretation—doesn’t tell us everything—but people assume that it does
You can specify other particular wishes or desires explicitly, like no tube feeding, no transfusions, no dialysis, etc.
You designate an agent and alternates to make decisions for you
BE SURE YOU PICK AN APPROPRIATE PERSON!
These forms are not doctor’s orders—hence, Paramedics cannot follow them
Everything Ages~!
Some Things (and People) Age Better Than Others
Advance Care Planning POLST—Physician Orders for Life Sustaining
Treatment
Became law in California in 2008
Bright pink form
Doctor’s Order, Actionable by Paramedics, Other Health Care Professionals Must Follow Orders
More Specific than AHCD or traditional DNR forms
CPR vs. No CPR (Do Not Resuscitate/ Do Not Attempt Resuscitation)
Full, Limited, or Comfort Care
Tube Feeding: Long-Term, Short-Term, or None
POLST Section A for complete cardiopulm. Arrest
CPR is an act of violence Rib fractures, sternal fractures, liver lacerations…
It’s not like on TV: Very low chance of survival for frail elderly who suffer cardiac arrest outside the hospital
If you survive, you will be in ICU on a vent
POLST Section B
Everyone gets Comfort Care!
“Limited” means roughly “no heroics”
Full treatment includes intubation/shock
Stages of Alzheimer’s MIDDLE STAGE:
More Behavioral/Psychiatric Problems Occur in Some Patients Paranoia Mania
Depression Hallucinations
Anxiety Delusions
Agitation Repetitive Vocalizations (“Help!”)
Aggression (Verbal/Physical) Obsessive Thinking
Pacing Wandering (Get Bracelet!)
Generally Need ’Round-the-Clock Supervision
More Trouble With Day-to-Day Activities (ADLs) Continence Dressing
Getting Up & Down Socializing
Talking Get Around the House
Meals/Eating Tasks Bathing/Hygiene
Reminiscence is a Good Thing
Stages of Alzheimer’s MIDDLE STAGE: CAREGIVER STRATEGIES
Don’t Argue—Try to Redirect or Change the Subject Consider Respite Care
Adult Day Care Paid Part-Time Caregiver Assistance In-Home Family or Friend Caregiver Assistance
More Trouble With Day-to-Day Activities (ADLs) Continence Dressing Getting Up & Down Socializing Talking Get Around the House Meals/Eating Tasks Bathing/Hygiene
Take Time for Yourself Every Day! Get Help for Difficult Times (Bathing, Meals, Evening)
Stages of Alzheimer’s MIDDLE STAGE: CAREGIVER STRATEGIES
Make a Backup Plan for Emergencies Consider Transition to Assisted Living Setting or
Specialized Dementia Unit Have Strategies to Distract Loved One when Agitated
Stuffed Animals Pets Dolls Favorite Foods/Snacks
Take Care of Yourself! Keep a Sense of Humor! Child-Proof the House & Simplify Their Environment
Block Off Stairs and Exit Doors Use Plastic Cups/Plates Consider Alarms, Extra Latches Avoid Throw Rugs Lock Medicine Cabinets Baby Monitor Can Help
Stages of Alzheimer’s MIDDLE STAGE: CAREGIVER STRATEGIES
Simplify Tasks for Them: One Step at a Time
Hands-On Touch, Hugging, Massage Can Really Help
Use Simple Language and a Calm Tone of Voice
Make Statements Instead of Asking Questions
Don’t Try to Reason or Get Them to See Your Point of View
Don’t Correct Them or Say, “You Just Asked Me That!”
Stick to a Routine! Change Can Be Very Confusing
Physical Exercise is Great, Like a Daily Walk or Stretching
Simplify the Clothing and Be Sure It’s Comfortable
Try Regular Bathroom Visits. Pull-Ups Better than Diapers.
Get a Shower Bench, Be Sure Water is Warm Enough
Stages of Alzheimer’s MIDDLE STAGE: CAREGIVER STRATEGIES
Regular Physician Visits if Plausible (if not, phone calls) If Non-Medication Strategies Fail, There are Drugs that Can Help!
May Need Strategies for Getting Medications Down Applesauce or Ice Cream
Get Rid of All Unnecessary Medications
In Some Cases, Other Formulations (Patches, Dissolving Tabs, Sprinkles)
Move to More Finger Foods, Less Need for Silverware
Don’t Try to Force Feed
Keep the Dining Table Simple, but Offer Choices of Foods
Nutritional Supplements, Frequent Snacks if Appetite Poor
Give Tasks that They Like to Feel Useful—“Reading,” House Cleaning, Washing Dishes, Previous Job Tasks
Stages of Alzheimer’s MIDDLE STAGE: CAREGIVER STRATEGIES
Play Familiar, Beloved Music—Encourage Singing
Try Not to Get Angry when Behaviors are Difficult
Don’t Take It Personally
If You are Depressed, Get Help for That! Therapy and Medication are Both Effective
Caregiver Burnout Very Common in Middle Stages
Respite for You: Include Actual Vacations if Possible
You Will Not Be of Help to Your Loved One if You Are Overwhelmed Yourself!
Tune In to Their Body Language
You May Need to Initiate Conversations
Pets Are Great Therapy!
Stages of Alzheimer’s LATE/ADVANCED/SEVERE STAGE:
No Longer Recognize Family or Know Their Own Name
Lose Ability to Walk, then to Sit Up
Incontinent of Bowel and Bladder
Lose Ability to Feed Self, then Ability to Swallow Weight Loss Common, May Develop Aspiration Pneumonia
Lose Interest in Food and Fluids
Spend Most of Time In Bed
Skin Gets More Fragile—May Develop Bedsores Be Sure to Turn/Reposition if They Can’t. Consider Special Mattress
The Good News: Behaviors Less of a Problem Usually More Passive and Uncommunicative
But Still Can Feel Sad/ Lonely/Anxious or Happy/Comfortable
Stages of Alzheimer’s LATE STAGE: CAREGIVER STRATEGIES
May Need to Transition to Skilled Nursing Facility
Should Consider Hospice When Totally Dependent Inability to Feed Self, Weight Loss, Skin Breakdown, Swallowing Probs.
Hospice Can Help in All Care Settings
CCRCs Are Ideal When There is a Spouse (Live On Campus)
Care Needs May Be Too Great for Smaller Board & Care Setting
If Keeping Them at Home, Learn Advanced Caregiving Skills Turning/Repositioning Fall Prevention
Incontinent Care Bathing/Hygiene/Oral Care
Range of Motion Close Monitoring of Skin
Floating Heels Avoiding Shear on Skin
Consider Other Equipment: Hospital Bed, Geri-Chair, Hoyer Lift
Stages of Alzheimer’s LATE STAGE: CAREGIVER STRATEGIES
Allow Yourself to Grieve
Keep in Mind that Dehydration is Not Painful or Uncomfortable
Force feeding is not a kindness
(If still in a private home setting:) Consider Respite Care in a Facility—Take Time for Yourself
Talk Softly & Reassuringly, Tell Them Everything is OK
Try to keep a consistent routine
Play Soft Music that they Like
Massage, Touching, Hugging, Applying Lotion, Brushing Hair
Hospice can be a great resource and no cost to the patient/family Needs to be at a stage of basically nonverbal or fairly rapid weight loss
Stages of Alzheimer’s LATE STAGE: CAREGIVER STRATEGIES
Be Sure Necessary Medications for Comfort are Given Consider Stopping Other Medications: Consult With Your Doctor
Be Vigilant for Non-Verbal Signs of Discomfort and Treat Them
Talk to Others Who Have Had Similar Experiences
Consider Whether Hospitalization is Desirable or Necessary Usually Felt to be Prolonging the Inevitable
Quality of Life vs. Quantity
Feeding Tubes Are Usually Discouraged Never Shown to Prolong Life
They have their own set of Risks (Aspiration Pneumonia, tube site infections, accidental removal—partial or complete)
Death from dehydration does not appear to be uncomfortable
Care Considerations: Quality of Life
Signs of Caregiver Burnout
Irritability/Grouchiness (toward loved one/others) Crying Spells Poor Concentration/Forgetfulness Impaired Sleep Changes in Appetite Sense of Hopelessness Extreme Fatigue Inappropriate Guilt Feelings Loss of Enjoyment in Activities Resentment of Others (for not helping, etc.)
Summary: Strategies for Burnout
Recognize and Acknowledge the Difficult Situation You Are In
Accentuate the Positive—Keep a Sense of Humor Take It A Day (Hour, Minute) At A Time! Acceptance of Situation and of Your Limitations
Spiritual Guidance if Appropriate
Ask for Help (Family, Friends, Organizations, Doc) Consider Medication for Depression Get Respite! Talk to Others in Similar Circumstances PLAN AHEAD!
Resources www.alz.org Alzheimer’s Association
www.alzheimersplaybook.com (Coach Broyles’ Playbook for Caregivers)
San Diego County Office of Aging & Independence 1-800-510-2020
www.sanalz.org San Diego Alzheimer’s Assoc.
www.eldercare.uniontrib.com/classes/suppalz.cfm
www.caringadvocates.org www.coalitionccc.org www.fivewishes.org www.theconversationproject.org
I Wish You Smooth Sailing